Cure SMA Community Raises Awareness of Spinal Muscular Atrophy

ELK GROVE VILLAGE, Ill. - Feb. 13, 2015 - PRLog -- Spinal muscular atrophy (SMA) is the number one genetic cause of death for infants, and 1 in 50 people carry the genetic mutation that causes SMA. But even so, many people are not familiar with SMA. Thanks to the Cure SMA community, that is changing.

Melissa Joan Hart recently posted about SMA awareness on her Instagram and Twitter accounts. WPTV in Florida did a story on the Myers family and their participation in the #SMAshSMA campaign. Several others have joined in to take the #SMAshSMA challenge.

The Myers family also joined with the Kulas family and the Miller-Smith family to spearhead outreach to actor Stephen Amell. Cure SMA community members Alyssa Silva and Diane Blair were featured on The Mighty Site. And these are just a few of the exciting developments in SMA Awareness.

All these activities originated directly from the SMA community. Melissa Joan Hart was contacted by Mary Kate Venedam. Working in memory of her cousin, Erin Trainor, Mary Kate reached out to Melissa Joan Hart and other celebrities to help raise awareness of SMA. The #SMAshSMA campaign was created by six-year-old Bailey Bucher.

The initiative and authenticity of the SMA community is what makes these appeals so powerful. And Kenneth Hobby, president of Cure SMA, says it's also part of what the organization envisioned when the name was changed from Families of SMA to Cure SMA last year.

"We chose the name Cure SMA because it reflects our vision of a treatment and cure for SMA, and because it allows us to broaden our community to anyone who shares that goal. Families were, are, and always will be at the heart of what we do. And we need to attract even more people to be a part of our work so that we can accelerate momentum toward a treatment and cure," said Hobby.

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About Cure SMA

Cure SMA is dedicated to the treatment and cure of spinal muscular atrophy (SMA)—a disease that takes away a person’s ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.

Since 1984, we’ve directed and invested in comprehensive research that has shaped the scientific community’s understanding of SMA. We are currently on the verge of breakthroughs in treatment that will strengthen our children’s bodies, extend life, and lead to a cure.

We have deep expertise in every aspect of SMA—from the day-to-day realities to the nuances of care options—and until we have a cure, we’ll do everything we can to support children and families affected by the disease.

Learn more about how you can help us reach a treatment and cure at www.cureSMA.org.